Fear can be paralysing. Fear of what we do not know or cannot see is something we are all a little more familiar with these days, but imagine if this was your normal. Imagine if you lived in a heightened state of anxiety all the time, without reprieve, because you, your child or someone you love has Neurofibromatosis (NF).
NF can affect anyone regardless of age, ethnicity, gender or family history and causes tumours to grow around the body’s nerve cells, including the spine and brain, under the surface of the skin or deep in the body.
NF is an unpredictable, painful and progressive condition.
Xavier is 7 years old and has learning difficulties and developmental delays. He has a severe speech impairment, a brain tumour and an invasive tumour that has wrapped itself around multiple nerves in his spine, hip and thigh. This tumour covers the entire lumbar region of his spine, wrapping itself around the nerves in his hip and finishes 7cm above his knee.
The tumour has caused scoliosis. Xavier's once straight spine is now curved at a 38 degree angle, but there is no way of removing or treating it without risk of paralysis or death. Instead, Xavier is forced to wear a brace everyday to try to correct the bend.
So much of Macy’s childhood was taken from her because of Neurofibromatosis. When she was 3 years old, she began to fall asleep in random places around the house and an urgent MRI revealed multiple brain tumours. She lost partial mobility down the left side of her body and was scheduled for surgery, but not all of the tumours could be completely removed.
The two years following, Macy received chemotherapy and had an MRI every 6 weeks. In 2014, she was diagnosed “legally blind” which signalled to the doctors that her tumours were no longer stable. She is now 10 years old, on a second clinical trial and yet, in spite of everything Macy is determined to return to school and take back some control.
Imagine if this was your normal. What would you do?
MAKE A LIFE-CHANGING DONATION TODAY AND HELP KIDS LIKE XAVIER AND MACY
WHAT WILL YOUR DONATION MEAN FOR FAMILIES LIVING WITH NF?
It means every parent with a newly diagnosed child can be empowered with balanced information and support.
It means clinical trials and research studies continue unimpeded, giving hope to families now and in the future.
It means every person who reaches out is able to connect with medical and allied health professionals that understand the nuances of NF.
It means that adult and child NF Clinics remain open and operational for families near and far.
It means there is hope for better life outcomes.
Every dollar you donate between now and the end of June will be matched to the value of $25,000 thanks to PBK Management!
